Monday, April 30, 2007

Smack Down Saturday

We get out of the car and you hear it: whack….or…twinnnannng…you pick up the sound of either a wooden bat hitting the ball or that of a metal bat (still allowed here in Georgia in youth baseball). You get some dust in your eyes from the wind blowing the infield dirt around in the air. You’ll be thirsty in 5 minutes. Youth baseball.

We walked up from the parking lot and I could feel Demetrius energy pick up as I held his hand, he wanted to run. He ran right over to the playground built for the little brothers and sisters of the kids playing ball on these fields. Also a place for him to explore and play, even though the fields around him are filled with boys his age.

Maya and Kennedy spin themselves silly

I am well grounded in our autistic world: I know and recognize what the reality is for him in the classroom. I see the body of work, and I realize where he is, and isn’t, and what he can produce. I also watch him ‘parallel play’ with his sister and friends. Even the kids that understand the boy sometimes stare when he is over stimulated…when he squeals loudly, or does his TV talk, and he catches them by surprise…I’m used to this. It’s become easier over these past 7 years. I’m unfazed as he plays at a playground suited for his 5 year old little sister. But I’m not granite.

—-

We went to watch our friend Joseph play baseball on a perfect Saturday afternoon. On one field were the kindergartners playing tee ball with the overly enthusiastic parents cheering little Robbie to run to base after he hit the ball 3 feet….albeit, he ran to third base after he hit the ball, but still….that roar of these parents…the clapping…Joseph’s in the 7 year old league where they have the ‘moved in’ fences, but the kids are organized and playing better…and as it is, some are really getting it (physically and mentally), but for the most part they are following the coaches direction and are attempting to relay the ball from the outfield to second to home. Joseph got a single and ran it out…beat the throw… he’s getting it.

Now don’t get me wrong, it was 7 year old boys…a few had more energy for the after game snack than the game itself, and one was trading what looked like Pokemon cards with a friend minutes after the game (you knew where their minds were during the game, not on the game).

But it was unbelievably hard for me…I steeled myself a bit (we all do it when we go to these things, or we try to, don’t we?), but I just simply wasn’t prepared. Boys were running around playing organized sports, throwing with their dads from a pitching mound…the entire male bonding crap. The crap that defined my childhood and relationship with my father.

However, Demetrius runs by the boys playing dodge ball against the wall, flapping his arms, squealing…completely happy…but completely out of it. He physically looks the same: same height, same build, same fresh look of life on the face…same teeth emerging in the front of their mouthes…but he’s not like them at all, is he? He’s right next to them, and miles away. They stop their impromptu game as he runs in front of them talking about, I don’t know what…he scurries on…I scurry after him…because he’s wandering off away from the fields… He nearly got hit by a boy pitching to his dad (a little practice) in the fenced off area for that…it needed to be explored and Demetrius was focused on getting in there, not a bit on what was going on in the pitching cage. He tries to run on a field where a game is going on (in his league they often wander on and off the field during the game, so why couldn’t he here?). I chase.

When I did get to sit and watch a bit of Joseph’s game…I overheard one dad talking with his older son about the NFL draft and Brady Quinn dropping and who the Falcons picked. I watched. I watched Mr. Joseph coach from third base…I watched the boys and their dads and coaches. I watched the game and went from melancholy to depressed. I try to always be melancholy when it comes to these things…I find I handle them better, but sometimes it is always a bit more than I can handle. These moments are fewer now…but they move us a bit down past being ‘just gray’ into that very dark place in us.

Long and short of it is that I simply had no idea that this ‘experience’ would hit me like it did. Was it Demetrius running past boys in real baseball uniforms? Was it boys bonding with other boys as they have on baseball fields for generations? Was it that I had Demetrius’ Miracle League Game fresh in my mind from just a few hours before? Was it a combination? Yes to all of it and to some deeply tied fabric of what was my childhood…. kind of weirdly unraveling in this moment. Reality. We aren’t here, and we just won’t be. We just can’t always have our thickest skin on, even when we try. I watched, and I just sank.

I chased after him again when the game ended. We collected him and the Carraghers and went back to the cars to leave. Funny how it works – because who grabs my hand but Demetrius. Not me grabbing his…he takes my hand and rolls his fingers in my bigger hand to get a quick stim.

Demetrius: Joseph’s baseball game is over?

Daddy: Yes, we are going home now.

Demetrius: Joseph is having a sleepover?

Daddy: Yes, he is coming over.

Demetrius: Can he come with us?

Daddy: Well, Maya and Kennedy are riding with us; do you want to ride with Joseph?

Demetrius: YES!

Well, maybe we aren’t there with baseball or youth sports and maybe we don’t have the things that complete Daddy’s internal vision of a father/son relationship…silly things that we carry with us in our life that we assume we’ll pass on to our kids…but riding with our longest friend Joseph is a heck a lot of cooler than riding with Mom and Dad and our sister and her friend. So many of these typical boy things are emerging.

I love how long it takes a Rhododendron to emerge, and when it does, its beautiful. I try to remember this with Demetrius. It just takes awhile….

—-

The Carraghers came over. We had a nice dinner and chatted. But like Demetrius at the baseball game running past the boys…I wasn’t there. Even with a sleepover the kids all crashed and the house got quiet. I sat downstairs on the couch and just stared at the TV. Somehow Kim just knew. The great spouses do.

I thought about how tired I am of worrying about his IEP. How worried I am about the toll that this takes on Kim each and every time we have one. Will I find the strength to begin to tell Maya about Demetrius being different – and how will we do it? I’m tired of squeezing his hand with fear that I’m going to lose him…all the time… because he’s a wanderer and he runs off no matter where we are and what we are doing…and I how I resent rarely getting to fully enjoy places, people and things because I don’t do anything but keep my eye on him and chase him down wherever we go. Only going to the movies gives me a reprieve.

The fear and nervousness that are always there…we just had ice cream the other night with friends and I never sat down, didn’t even try…because Demetrius kept running off into the field behind the ice cream stand and there is a drop off. Or towards the parking lot. Why sit? Why get to into the conversation with the adults? If I do, I’m just going to have to take off and get him. I am just tired chasing…

I know I’ll suck it up, tighten the belt, and go back to it tomorrow. But Saturday it just crescendo.

I got ready for bed, went down, and slept on the couch. I just needed my space, and I need to be with ‘this’…I didn’t want to talk about it. I just needed to work it through my head. If I brought it up, we’d be up to 1am talking…I didn’t want that. I know at times Kim needs to talk, and at times needs to talk to friends instead of me. I needed to roll this all around and then write it. Talking is for some other time.

—-

Demetrius and Joseph have been sitting in this chair together watching SpongeBob for the better part of four years…I hope they outgrow the chair doing it at times. He’s our longest tenured friend. He gets Super D.

6:30 am comes and Joseph and Demetrius are standing over me.

Demetrius: Daddy?

Daddy: Yes?

Demetrius: We want donuts.

Normalcy comes in fits and starts in autistic house. While these children are prisoners of their condition and parents spend the rest of their lives swimming against the current, you have to appreciate the moments when you get them. A crack of dawn request for donuts. The want to ride in the car with one of the few buddies you have. You have to see and appreciate these.

A lilac blooms for about a week to two weeks each year. If you don’t notice, you’ll miss its beautiful flower and wonderful scent. It pays to watch, and notice what blooms, and when, your garden

You also have to curl up on the couch and say to yourself, “I don’t know how I’m doing this.” You need to be frustrated, angry, sad, and depressed. But you have to know you are going to get up the next morning and start over and you will do it. You have to.

And like my Saturday afternoon reality sucks moment… you have to leave behind a part of you and go find a new one to replace it. You have to stare that pain right in the face, take it, feel it, become numb to it, and find something to replace the hole in your heart that this other part of you was kept in. Plug it up with something that at least doesn’t hurt. Hopefully with something that makes you happy.

You have to simply know the stakes of the game of being an autistic child’s parent. The game is you’ll take the pain of what you don’t have and trade it for a little happiness for what you do have. It’s not a fair trade. But it is what it is. A lot of littles. Not a lot of bigs. A lot of running in this game. A lot of chasing.

The donuts arrive at about 7am; Daddy has a cup of decaf and a bit of a sore back. The noise level goes up with the ingestion of sugar and the decibel level of talking among little girls and Joseph is a bit loud for 7:05 am. Demetrius is at the table with them, but turns away a bit because of the noise…

I notice it. I’ll take it. I’ll embrace it. Time to suck it and play the game again: “Demetrius…talk to your friends.”

Another day.

Someday Demetrius, someday… the flowers may all bloom at once, and won’t that be a sight for the world to see…

 

Posted by Jerry in 22:19:20 | Permalink | Comments (5)

Friday, April 27, 2007

The Bring Your Kid To Work Overhang

Bring your kid to work day was a breeze. Dunno what I was worried about.  This is interesting though: we all talk how our autistic kids have a hard time transitioning, but I swear sometimes this is some sort of outgrowth of the human ‘body clock’.  About 2pm he just looked at me in my office (watching TV while I was working) and said, “I want to go home.”  This is within moments of when he would have gotten on the bus and come home from school.  He just knows…and we needed to go, he knew it was time for him to go home, and he pretty much got itchy trigger finger and a bit ‘squeal-y’ as soon as I said ‘okay’.

But, along those lines, he was off center for the rest of the day.  I think there was the excitement overhang – he didn’t get to bed until about 9:30-10:00pm the night before (excited about ‘not going to school’ and going to ‘Daddy’s office’) and was up ready to get in the car to ‘watch videos’ on the way to Dad’s office at 5:30am.  There was an element of physically tired, and others of uncomfortableness and transitioning and not being able to experess himself, etc.. being around people he didn’t know and things he’s not used to…so when he finally got home and comfortable….crash, boom, bash.

I would say he threw a good fit from about 5:30ish at least until dinner at 6:30pm…and pretty much smoldered for the remainder of the night…that takes so much energy and takes such a toll…once he was done with dinner he just went up to his room and ran around until it was time to go to bed.  Kim tried to read with him – useless, he couldn’t and wouldn’t sit down or try to concentrate on anything…he was just spent.

Of course, we had other elements of drama also – Joseph is spending the night on Saturday night, and Emily can’t. NO EMILY..OH THE HUMANITY! Her grandma is in town.  Maya was in tears over this and could not be consoled…and with her brother’s fit, she decided she needed to chip in, no doubt.

I’ve been at this parenting thing for 7 years, and I should have known, I just should have been prepared for Demetrius being off center from the moment we walked through the door from the day at the office.  When will I learn.  I fussed at him when he threw his fit, and I should have just let him throw it and get over it.  Oh well, when I quit reacting to it and thought about it…I just let him lie on the couch and blow steam and noise…he got a little extra whip cream on his ice cream last night though.  Big, and for him, very hard day, I’m sure – in his own autistic way that I should have, frankly, anticipated would happen.  That deserves a second dollop of the tasty stuff, don’t you think?

Posted by Jerry in 13:54:33 | Permalink | Comments (2)

Thursday, April 26, 2007

At Work With Daddy II

The kids drew their own Web pages of their own web sites. Demetrius really got into it. The ones around his head are his, they are Web pages of him at school and playing on the computer

Demetrius even got his own card key to let him into ‘rooms’ by ‘Daddy’s Office’

After a long morning working…its always good to kick back in Daddy’s office, watch some TV, and eat some pizza and apples

We dressed the same today, to be sure that if I got lost, they would know who I was with! :-) We are both showing off our card keys and cute legs…

Posted by Jerry in 18:39:23 | Permalink | Comments (1) »

At Work With Daddy

Had our first meeting of the morning, an 8:30am-er, in a conference room over donuts and orange juice. Demetrius was brave enough to ask the girl next to him if she liked Spider Man. She didn’t. She didn’t get talked to again – give a wrong answer, you’re irrelevant. He’ll make a fine executive some day.

I told him I had to leave, he looked at me and said, “Okay Daddy, get me another donut.”

I may be a bit worried – clearly, he is not!

Posted by Jerry in 15:41:19 | Permalink | Comments (1) »

Wednesday, April 25, 2007

Target or Homework – Is she serious?

I was going to write this earlier in the week, but I just had too many photos to share. Tomorrow will probably be that way, since it is bring your child to work day here.

So after our very busy Saturday, and before our very busy Sunday, Kim scooted off to ‘early church’ and I had the brood. I had a few errands I wanted to get out of the way, so we got up and got going – which means, breakfast out! The kids wanted IHOP, I didn’t want to wait in line or have the clean up of syrup all over them as they wiggle-wormed around the booth. So instead I offered up pancakes and ‘French fries’ at McDonalds (they call the potato patties breakfast French fries), plus, they can play. Sold.

We then went to the ATM, gassed up the car, onto Home Depot for a new sprinkler….and then to Target. So at Target we got ‘summer PJs’ and were stoked! Supergirl! Batman! Can I have a toy! (No….) New Dr. Seuss toothpaste!….

So of course the PJs had to go in the washing machine as soon as we got home. Mommy returned not long thereafter – she listened to Maya and Demetrius relay the morning activities, and she turns to me:

Mommy: You are a sucker. Take them to breakfast and go buy them things.

Daddy: Maya and Demetrius were both telling me they were hot last night, they needed summer PJs!

Mommy: They didn’t ‘need’ summer PJs. You ‘wanted’ to buy them summer PJs. They are easier to manage if you keep them busy and occupied running around store-to-store. (This is her opinion…Demetrius has some PJs that are now so small they resemble tighty whities more than PJs..)

Daddy: Yea, so what?

Mommy: You could have stayed home and done homework or read to them.

WHAT? Was she serious? Of course she was, and it is practical. But I’m Dad, I’m the guy trying hard to get into Maya’s art drawings of the family! Let me see, have my kids happy, or have them fussy and whiny trying to read or do math on a Sunday morning…

Then you smile. This is one of those conversations you have with the spouse and then realize – we’ve completely, 100%, become parents.

Well, at least Kim has. As I was thinking about this, I was mowing the lawn, and lost this thought as a favorite song came on and I visualized myself as a guitar god.

Hey, I’m a guy, a semi-mature father, and a PJ buyer. What should she expect out of me?

Posted by Jerry in 16:27:02 | Permalink | Comments (1) »

Tuesday, April 24, 2007

Maya’s Bringing The Art Home

As you know, Maya is into ‘art’ in a big way, and this latest session of classes has been all about the pottery, which is now making its way home. She was very proud to show off for me:

This brick? Is it some sort of abstract replica of the United States? A swan? I dunno, but Maya did it, so whatever it is, I think it is perfect!

As you can see, this pinch pot ain’t too bad. And what are those? Kilned cherrios on the side? Again, not sure, but since Maya made it…it’s perfect!

Mommy also let Maya do some drawings of the family to hang in this picture holder for Mommy and Daddy’s bedroom

  • The top picture is a drawing of Maya and Demetrius playing
  • The next picture is of Maya, Demetrius, Emily and Mommy going to get ice cream
  • The bottom picture is Mommy, Maya and Demetrius going to the library

Well, at least in these ‘family pictures’ she forgot both Daddy and Buddy, and since this is the second time this has happened, I am not sure I want to know who comes next after Emily…Daddy or Buddy…or should I write Buddy, then Daddy. I need to be realistic though, don’t I? Laughing

As you can see, she’s very proud. After I took the picture above she asked me if I liked them…

There is, of course, only one answer to this question: “Maya, they are perfect, I love them!”

Posted by Jerry in 15:17:05 | Permalink | Comments (1) »

Monday, April 23, 2007

Burning Calories

A couple of you emailed that if Demetrius & Maya eat this way, they’ll get fat.

I say no way, we spent all day outside, running around a carnival on Saturday:

We stood in line and bounced and rocked and sprinted to talk to friends while Daddy held our place to ride in this twirlly thingy

We did the wall climb about four times each. In fact we would try to go all the way to the top….

Until we would look down, then we’d get a bit scared

God knows how many times we did the cake walk, even though we won on the very first try

The only time I can remember us standing still was to get in line for the 10-11th time we did the cake walk

Or getting our finger nails painted (NOTE – Dememtrius was climbing the wall, again, at this time)

See, aren’t you tired just looking at these pictures? They blew through those calories…..and were looking for more!

 

Posted by Jerry in 19:17:54 | Permalink | Comments (1) »

If You Try To Keep Up, You’ll Get Fat

It has become clear to me that the reason most Americans are fat is because they try to keep up with their children, and thus, they eat like their children. An example would be Demetrius on Saturday. These pictures are between the hours of about 9:30 am – 4:00 pm:

Demetrius eating donut, before baseball game, 9:30am-ish, Saturday morning

Demetrius eating slice of Costco pizza, drinking lemonade, 11:30am-ish, Saturday

Demetrius and Maya eating 3 cookies a piece, 2:30pm-ish, Saturday

Demetrius eating sour Now-N-Later candy, at about 3:15pm-ish, Saturday

About 4pm, he ate a SpongeBob SquarePants ice cream treat….

See, Demetrius burned all of these calories, he never stops moving, and his hourly metabolism runs at the rate of Bjorn Borg playing a tennis match! Me, in that period of time, I ate one of his donut holes and a hot dog.

My pants don’t fit anymore.

Don’t try to keep up with your kids and their eating habits. They burn their calories (run everywhere, don’t walk, etc…), we store our calories.

Posted by Jerry in 16:58:08 | Permalink | Comments (2)

Nick News Special on Autism

Anyone else see this last night? Very good for educating the younger set. You might want to push neighbor kids, babysitters, family friends, etc…to watch this.

Why do these shows always have something on the savants…it makes it seem like it is common? That’s my only critique….

Posted by Jerry in 15:29:14 | Permalink | Comments (1) »

Saturday, April 21, 2007

It’s A Good Gig If You Can Get It

Ahhhh Buddy….you get comfortable, okay?

Posted by Jerry in 00:23:57 | Permalink | Comments (1) »